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I hope you are having a good holiday weekend.  I am a 41 year old female with multiple conditions.  I have ACM/Syringomelia/Trigeminal Neuralgia/Narcolepsy, spinal stenosis and Arachnoiditis.  

I have undergone Gamma Knife surgery for the Trigeminal, which worked, but the nerve is now regenerating.  I have undergone decompression/C-1 laminectomy/duraplasty for the ACM/Syringomelia, which also helped, but I am now getting much worse.  I have been fused on two levels, C-5/6 and 6/7 for spinal stenosis and for an original fracture of the neck.  This also helped.

When my neurosurgeon opened my brain for the decompression/duraplasty he discovered arachnoid adhesions/lessions.  He removed numerous arachnoids and my arachnoid covering was distended and discolored.  Due to my history being 19 years long, I have undergone multiple rhizotomies, nerve blocks, myelograms, angiograms, spinal taps not to mention the surgeries and radiation in attempts to aleviate the pain.

Now, I believe that in attempting to relieve, it may have caused the arachnoiditis in my brain.

I am experiencing intense burning pain in my hands and feet.  My legs and arms have considerable spasticity, they are stiff and weak and very painful.  I am having some visual changes, blurring and loss, along with bladder control and urgency issues.  I again have tremendous facial pain, nausea and extreme fatigue.  I can not walk far, as the pain is unbelievable.  I also have headaches that I could never begin to describe.  I have been to the emergency room for injections of demerol twice in the past 3 weeks.

My neurosurgeon states that my fourth ventrical's flow is minimal, and blocked with scar tissue.  

I would appreciate any information on arachnoiditis that you could give to me, being that most of the information that I can find is on 'A' in the spine, mine being in the brain.  Does it always progress?  Do I live with the adage, do as much as I can now, or should I slow down, to slow down the progression? Is this terminal?  Since I do grow the scar tissue, would further surgeries seem to not be the answer?  

Thank you so very, very much for your time, and I apologise if this was too long.

5 Responses
Avatar universal
Dear Nancee:

Sorry about your many problems.  Arachnoiditis can be very problematic with chronic neuropathic pain, variable sensory motor and reflex changes.  Usually this entity arises from nerves entrapped in aracnoid-dural adhesions.  These adhesion can arise from foreign substances instilled into the subarchnoid space (anesthesia agents, infections, steroids etc).  This can also be from disc herniations or protrusions.  Unfortunately, there is not much success with treating this condition.

CCF Neuro MD
Avatar universal
Thank you very much for your informative response.  

Can 'A' cause paraylsis, vision loss or be fatal if it is located in this area?

Thank you again for everything.  This list is the best!

Avatar universal
Nancee, I found this site one day about a Doctor researching Arachnoiditis, there's lots of info and forums to search. Hope this Helps!  Rick
Avatar universal
Thank you very much for the information.

I really love this site!

Hugs, Nancee
Avatar universal
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